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BY KATHY LATOUR | MARCH 22, 2011
It's great to see all the new research on chemobrain, and we are happy to give you an update on that information for your own journey in the Spring issue in "Lifting the Fog."
Of course, I've known since 1989 that this phenomenon is real. We often talked about shared symptoms in my support group, and we were all equally frustrated not to be taken seriously by our oncologists. They said it was all about estrogen or some other random connection. It was irritating to offer observations that were dismissed because we were only patients!
That's one reason I was also excited by this story and by a conversation I had with the writer Elaine Schattner. There is evidence that research into chemobrain was one of the first - if not the first - long-term effect that began being researched because patients were self reporting a problem. That means that the docs heard it often enough from us that they began to believe there was a legitimate problem, and that led to research.
There are still those out there who say it's too hard to tell if chemobrain is connected directly to the treatment because there are so many things in the cancer experience that can case cognitive problems, but now the research is even overriding that argument. As one researcher said in the story, 26 years ago she was just giving patients memory tests and today her research is adding to the body of knowledge that this is real.
But we can't stop there. We need to figure out how to deal with chemobrain, and, at the very least, patients need to be told from the outset that mental and physical fog could be a side effect of their treatment. For those whose livelihood is connected to doing a task that requires detail and constant updating of intricate information, chemobrain is no laughing matter. It could be the side effect that ends a career. For this reason, patients need to know this information to determine benefit versus risk. If chemotherapy will save your life, there is not debate, but what if it's being given when it decreases your risk of recurrence by 5 percent. Is it worth it in the profession you have chosen?
Idelle Davidson and Dan Silverman tell some of these stories in their book Your Brain after Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus. I often blame chemobrain for forgetting something and laugh it off, but after reading some of the stories in this book, it will be hard to treat it lightly again. I will think of those like my friend the attorney who couldn't call up words as easily after treatment. When standing in front of a judge and jury, talking on your feet on behalf of your client is critical and chemobrain can make that mental word search impossible. Name a profession and you can see where this after effect could have major negative impact.
For some of us the mental fog doesn't last long – at least I don't think it did. I don't have anything to compare my life to other than going through chemotherapy at age 37. I clearly remember the frustration at not being able to do my weekly shopping from a mental list. For me it was just the irritation of having to write it out. For some this long-term effect can have devastating results.
There is another message here. Tell your oncologist about side effects you experience. Keep a log, write it down. They will act, albeit slowly, when enough patients point out the same issue.
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I have chemo brain. I had chorio carcinoma about 25 years ago. I had a tumor in my brain that they removed. Then they treated me with Chemo and radiation. In 2004, I was diagnosed with breast cancer. Both breasts were removed because of my risk of cancer. I was treated with chemo and radiation (again).
I started complaining of memory loss, loss of words, lack of time orientation, etc. My doctor, Dr. Virginia Borges, was quick to pick up on these symptoms. She ordered several exams with a neuro-oncologist and a neuro-psychologist. I am in counseling at this time.
- Posted by Barb Sather 3/31/11 8:49 AM
I had chemotherapy in 2004 for breast cancer followed by radiation. Then in 2006 another recurrence which required more radiation in the chest. I began experiencing short term memory loss shortly thereafter. Nothing too major though. Today I'm experiencing LOTS of anxiety due to constantly making mistakes, memory loss, and not being able to to recall words when trying to communicate, and making tons of errors while typing. I was a really good typist. Now I cannot type more than a word or two without errors. SO FRUSTATING. Didn't really think it was chemobrain this far out from treatment, but after reading the article in CURE Magazine, I believe that is exactly what I'm dealing with... Just don't know how to overcome it.
- Posted by Dean Dacus 3/31/11 2:00 PM
I had 6 months of treatment, 6 months off and 3 more months of chemo then a stem cell transplant which was 2 years ago for Hodgkins Lymphoma. I absolutely had chemo brain and I am just now starting to feel like the "fog" is beginning to lift. I have lost short term and long term memories. I rarely trust my memory anymore. I have trouble staying on tasks also. I feel so scatter-brained. It is terrible.
- Posted by Kathee Johnson 4/1/11 1:04 PM
Eight years ago I was diagnosed with ALL (leukemia, the aggressive kind) at age 37. I had chemo and I don't remember a lot of it, I was definitely in a "chemo fog". In preparation for a stem cell transplant I had 6 sessions of full body radiation and more high dose chemo. I am cancer free, happily, but I could never go back to teaching. I don't have the stamina, I have short term memory issues, word recall can be really bad, and multitasking can be difficult. I also take longer to process information. I also lose track of what I am saying if I get distracted... I have to ask someone what I was saying! My husband and kids try to be patient with my memory lapses and how I lose things a lot. This is 8 years later! Despite these issues, I am usually happy and enjoy my life. It is just completely different from before. (I had to correct many errors as I typed this)My biggest worry is that at some point I won't be considered "disabled" and will lose my disability insurance payments.
- Posted by Karen Gustafson 4/5/11 2:36 PM
On March 4, 1999 I was 27 yrs old a mother of 4 and diagnosed with stage 4 Squamous Cell Carcinoma (Lung Cancer) with Mets to the bone. After surgery, chemo and radiation I'm blessed enough to still be here enjoying my family and MY LIFE... chemobrain and all!!! I have been having memory loss since shortly after chemo ended but I just thought It was the medicine working itself out. Years later it really hasn't gotten any better, I have just adjusted as well has my family. There are days I wake up and forget even the most important things that I had just set up to do the day before. It is nice to at least know I'm not alone. If this is all I have to put up with to live out my life, then I say bring it on!! As long as I can stay as healthy as I am today. Considering, the doctors all said I had less the a 3% chance to survive a year not alone 12 yrs... I sure will take 12 more just like it. We just adapt and overcome the odds. That is what we all have done. God blessed us all.
- Posted by Loretta Maiori 4/5/11 8:52 PM
I remember after my second treatment of CAF my brain burned, I could not sleep because the pain was so intense. I told my Doctor,of my burning brain and he ignored my complaint, well really what could he do, stop my treatments? I owned 2 small stores in Idaho and began forgetting my long time customers names. I could not recall phone numbers and then I began having trouble during phone conversations. I would have trouble find ing words I needed to complete my sentences, and just stop talking for several seconds.
Since then I have not been able to recover from the symptoms. In fact I returned to school and I would need to read the chapters at least 3 times to take the tests and I have to read the chapter the same day I took the test. As I re read I remember what I had read but cannot keep it in my memory.
I am lost, like Loretta says I forget the thing I need to do and I lay awake at night and tell my self over and over what tomorrow is waiting for me to do, and I wake up and can not recall any of it. In fact if I am really tired and I lay awake thinking, I can't recall what I was thinking 3 seconds earlier.
I really want help now.
- Posted by Teresa Herrera 4/13/11 3:44 PM
In tax accounting memory is very important. I'm currently taking a grad class and really struggle with both short term and long term memory retention. I lost my prior job because I had difficulty remembering new things I was learning. In my current job I learned a new audit area and didn't do well. One of my review comments was that supervisors don't understand why I'm not catching on as quickly as expected. I keep thinking I just need to try and keep myself employed until I'm able to retire 15 years from now and I work very hard at compensating for my inability to remember.
- Posted by Michelle Long 7/23/11 6:22 AM